Spreading Reach in a Low-Resourced Environment

Merry Barua, Action for Autism

A. Introduction

From a disorder that was thought to occur infrequently, to one that is now believed to occur in one out of every 250 newborns, autism has had an eventful and rapidly evolving history. So have treatment approaches for individuals with autism spectrum disorders. However, most treatment options for children with autism are extremely resource-intensive with the requirement of resources increasing in geometric proportion to the number of students being served.

A feature common to developing nations is a paucity of services, and the number of specialist schools is few and far between, though the situation varies from country to country. The initiative for the creation of services typically come from parents and in India it has been no different. This paper describes some practical initiatives that address this deficit in ways that has the greatest impact and makes use of available resources effectively.

Autism in India - An Overview

A short overview of autism in India will allow the reader a better understanding of the particular nature and needs of the autism community and the rationale behind the strategies being outlined in this paper.

Incidence

No surveys have been carried out in India of the numbers of persons with ASD. What is certain, however, is that the numbers run into the millions. We calculate that there are two million people with autism, at a conservative estimate, rising to four if we go by occurrence rates of 1 in 250 as currently accepted in the USA and UK. That is enough to populate a small European nation.

Community

The wider community has limited awareness of autism. The educated in larger towns and cities have heard about autism through the English-language print media, as well as television, which has covered it quite a bit lately. The film Rainman and Mark Haddon’s novel, The Curious Incident of the Dog in the Nighttime, have raised awareness amongst the more literary inclined, as has Hari Kunzru’s Transmission. There has also simultaneously a growing interest in disability issues in the entertainment industry and autism has found mention in the hugely popular Hindi film industry.

Medical Professionals

There is greater awareness among medical professionals, but 'Can you explain autism?' is a question one still hears. At a medical conference where our organisation spoke about autism, the questions fielded indicated very clearly that, though the attendees knew ‘of’ autism, they were not certain how exactly it affected individuals.

Special-needs professionals

Among special-needs professionals, there is a varying range of information and understanding. Most of it is coloured by (an almost subconscious) belief that autism is global developmental delay with difficult behaviours. This belief impacts the handling and teaching, without taking into account all the difficulties of switching attention, joint attention, reading minds and so on. The focus is on badly behaved, violence-prone difficult children who need strict disciplining.

Legislation

Following successful lobbying, autism is now referenced in one of the three legislations for disability in India and autism is under the purview of activities of a statutory body the Rehabilitation Council of India which regulates training for ‘rehabilitation professionals.’ However we have not succeeded in including autism in the Persons with Disabilities Act, which is currently up for amendments, though efforts are on by activists across the country to ensure that these are in keeping with the aspirations of the community.

Treatment

There are around 20 specialist schools with an average of 30 students per school in the entire country. The rest of the population are in the nearest special-needs facility that would be willing to have them; in mainstream schools, if their behaviours are not seen as too disrupting; are home- schooled; or receive few or no services. In short, there is little choice available. Similarly, there is little support for a child who is ready to transfer to a mainstream school after a few years of receiving autism specific support.

Action for Autism – An Overview

Action For Autism (AFA) was started 15 years by a mother who had come to realise that, though her son may or may not have mental retardation, that did not really define the person he was. It was his autism that truly defined his personality. Initially, Action For Autism focused on awareness-raising and networking. But the very process of raising the focus on autism threw up unexpected challenges. The reasation came that advocating for the rights of persons with autism could come about only when a) they were accepted as a population distinct from mental retardation and with their own specific needs; b) they were not viewed as a ‘hopeless’ population that too much time should not be wasted on; and c) it was acknowledged that the only way to do this was to set up educational services and through its activities demonstrate that children on the spectrum could learn and progress with appropriate intervention; d) it was understood that one reason why children with autism seemed so hopeless was because they were being taught without an understanding of autism and using methods that were inappropriate for their needs and without the knowledge that these may not work with them.

That started the school, Open Door, India's first specialist school for autism. At the same time, AFA started its first teacher-training programme as well as a periodical, Autism Network. In quick succession it started off lobbying with the government machinery for the inclusion of autism in legislation, as well as its training programmes, has informed doctors, affected legislation, facilitated the startup of schools and services, and given the autism community a voice..

B. Characteristics of Effective Programmes for Low-Resourced Environments

By definition, a ‘low-resource environment’ is one in which is the lack of services and professionals is a hallmark. India has an estimated four million individuals with autism. Given the number of schools that operate and the resources that are required by such schools, with even the best of intentions, only a small number of the autistic population will receive appropriate education through the school system.

In India, parents are deeply involved in the upbringing of their children. When a child in the family is diagnosed as having a disability, many mothers give up careers to become stay-at-home mums in order to help their children. AFA saw this huge untapped resource and decided to utilise families as an important instrument in spreading reach for children with autism spectrum disorders and thereby fill the gap in services.

In our experience, there are several characteristics that make programmes for such environments effective.

The programmes:

• Must be accessible

Families from a wide range of backgrounds and children with a wide range of characteristics all have important needs. With a limited number of professionals, programmes ideally have to be designed to target families for all different backgrounds regardless of level of functioning of the child or economic background of the family. It should be possible for families who are far away to access the programmes, and they have to be cognitively accessible and readily understood. Information imparted has to be jargon-free, and as easily understood by the parent who has just received a diagnosis as the one who has scoured the Internet and is well-read on the latest treatments.

• Dymystify professional expertise

A successful programme will help families feel ‘in charge’. The programme will help families overcome over-dependence on professional input, and motivate and enable families to go back to their home areas and become an example to other families and perhaps even become resource persons for others. We aim to create a ripple effect and for families to act as a resource for other families in their home area. Empowerment is a major aspect of demystifying professional expertise, so that parents and professionals from different backgrounds share mutual respect and work alongside to help the child.

• Must be practical

There are many treatments, interventions, tools and methods of working with children with autism that one can read about on the Internet, but which are not available to families in many parts of the world - or, if they are available, it is at great expense to the family. In order to have the maximum impact, programmes in low-resourced environments must be practical. They cannot ask a parent of five children to spend eight hours a day focused on only her one child with autism. The programme cannot demand expensive props and toys as ‘essential’ to its delivery. They must respect the cultural and economic constraints of the environment and, in fact, have the flexibility to get around them. The programme must help the family make the best use of what is available that can help their child reach his potential; guide the family towards creative and inexpensive, yet effective alternatives.

• Must make good use of resources

In contrast to children with autism in many developed countries, children in India and most other countries do not have a guaranteed right to services. Parents typically must pay for services themselves, and this has the potential to create an unhealthy system, whereby services for children with special needs are sometimes prohibitively expensive because of the high demand and limited availability. Ideally, services and programmes operating in low resourced environment must maximise their effect while still maintaining quality.

• Easy to replicate

If a programme is to be effective in spreading reach, ideally it should be possible to replicate with ease. It would then be possible for other organisations to start similar programmes which would help multiply the effects of the original programme.

C. Overview of a Few Programmes with Wide Reach in Low Resource Environments

AFA started at a time when, for all practical purposes, autism was an ‘unknown’ condition in India. Operating in a low-resource environment has been a reality for Action for Autism since its inception. AFA undertook a number of initiatives to create a difference in the environment and each of these attempts to meet one or more of the aforementioned criteria for successful programs operating under such circumstances. A brief summary of these activities follow:

Awareness and Advocacy

Spreading reach has to start with awareness and advocacy. Increasing awareness of a lesser-known disorder such as autism is necessary for doctors to make accurate diagnosis and for society to begin to integrate autistic individuals into the mainstream. Action for Autism has undertaken various projects to promote awareness and understanding about autism among parents and professionals – including medical professionals - as well as the general public. Government recognition of autism in India is an ongoing campaign of Action for Autism. Lobbying will continue until appropriate legal reforms for people with autism and related disabilities have been achieved.

Disseminating Information

Information is an important tool for access and empowerment. There is a dearth of indigenous information about autism in India. Yet hundreds of books have been written on all aspects of autism, as well as on-going research in a dozen countries around the world, and several thousand links on the Internet. Because of the prohibitive cost of these books and services, the vast majority of families are not able to obtain all the information they would like, although use of the Internet among Indian families has increased dramatically in recent years. Action for Autism maintains a library of current and relevant books and journals from abroad and makes them available at a reading room that is open to all. For those outside of Delhi, we field requests for photocopies of certain topics and compile packets as per individual needs
While journals about autism are available from various developed countries, these publications may not be relevant to families in India. The journal, Autism Network, is a forum for those who deal with autism in India by bridging the gap between what occurs elsewhere in the world and here in India. It addresses readers’ queries and concerns and shares information on a range of topics of relevance to families in the subcontinent such as services, education, health and legal issues. The journal reaches 2,500 parents and professionals in India and overseas and serves as a tool in autism management and intervention.

For those who can access the internet, AFA maintains an informative website http://www.autism-india.org that also carries information on events and trainings. The website is now regarded as an important resource for parents as well as other caregivers, and receives roughly 8,000 unique visitors from all over the world each month.

Training Teachers

An effective way to spread reach is to train personnel who, in turn, will bring the training to families. Action for Autism pioneered a training in autism spectrum disorders that imparts a comprehensive understanding of autism and autism-specific techniques. Teachers are trained to approach students with a transdisciplinary approach where along with special education, they gain knowledge of family counselling.

Open Door School Project

The most obvious manner to create awareness of autism- specific techniques, as well as reach those affected, is through a school. Yet running a school can make great demands on resources. As previously noted, Open Door was begun in March 1994 with the conscious decision to keep it small. The aim was to use the school to test, modify, and adapt training techniques gathered from around the world to the Indian context. In a controlled setting, new techniques are tested before being referred as an effective technique to parents and professionals. The focus was to use the skills developed at the school to spread reach. The school serves as a model for replication and has indeed facilitated the start-up of schools in other parts of India.

Early Intervention and Programmes for the Home

Keeping in view the galloping demand for treatment, a new component to address the needs of these children and simultaneously empower and enable parents was undertaken. Under this new programme, parents bring their children once or twice a week for intensive one on one work. However, it is essential that the caregiver – mother or father – has to be present to observe and learn. Each session is followed by a discussion with the parent on the work done and the carryover to the home. The aim is to train the caregiver to take charge of the training over a period of time. The discussion at the conclusion of each session acts as a catalyst for many parents who over a period of time find themselves able to take over the programme. For families who cannot come regularly or have difficulty traveling with their children over long distances, parents receive support and guidance on specific issues that they must deal with. The sessions take the form of discussions and sometimes a demo session to help clarify doubts.

Workshops and Lectures

The increasing numbers of families coming in for programmes for the home as well as for early intervention made us rethink our strategy. While the early intervention and programmes for the home were invaluable in reaching and helping larger numbers, practical and interactive training workshops in teaching children with autism would clearly help to spread information and ideas to a group simultaneously.

Since 1995, AFA has planned and executed interactive jargon free training workshops for parents and professionals, and these have become one of the main avenues by which information about autism has spread throughout India. These workshops are attended by parents as well as other practitioners for a variety of locations. Apart from the workshops that AFA gives in Delhi, the team is invited to conduct in places outside Delhi, including Mumbai, Kolkata, Bangalore, Chennai, Goa and several cities abroad. AFA has also co-ordinated with professionals from throughout the world to present on various topics. Just a few of these topics include: RDI, behaviour modification, TEACCH, developing Individualised Education Plans, Verbal Behaviour, AAC strategies, neurological behaviour aspects of the PDDs and sexual concerns among individuals with autism.

D. The Mother-Child Programme: Detailed Example of a Project Geared to a Low Resource Environment

As already noted, AFA has developed and executes a number of programmes that have been effective in spreading reach despite a paucity of funds and other resources. Perhaps the most exciting of these is the Mother Child Programme. The programme crystallised from our experience of the ability demonstrated by parents, usually the mother, to take charge of treatment.

Started in 2000, the Mother Child Programme is run over 12-week periods starting each January, July and October. A group of approximately 15 to 20 mothers from all over India train together (with their children) through the duration of the programme. Therefore, families living outside Delhi have to be willing to make a commitment to shifting to Delhi temporarily. The programme seeks to maximise the benefits of the time that a mother spends with her child, teaching focused one on one intervention tailored individually to each child and taking into account the child’s strengths, emerging skills and weakest skill areas.

It provides an environment where mothers, on occasion fathers or a grandparent, can work with their children under the guidance of an experienced, trained therapist. Mothers receive extensive feedback and join a discussion group where they can compare perspectives and forge links with parents experiencing similar difficulties.

The success of imparting skills to the mothers lies in the manner in which the skill is imparted. The programme must help mothers to become effective therapists for their child. It follows that training must help the parent learn the principles of treatment rather than ’what should I do in this situation.’ Mothers have to learn that each situation will be unique and serve its unique function. To be effective they must understand that function, the unique ways that autism affects the child, and then take considered action.

Principles

With early and appropriate intervention, every child with autism can be helped to lead a dignified and meaningful life.

Nobody knows a child better than her parents, so when the parents know how to appropriately teach their children, they are the ideal people to help the children learn and grow

When parents know how to appropriately teach their children they are empowered to take an active role in shaping their child’s and family’s future

When parents are taught strategies of relating to and educating their children, the parent-child interaction becomes more meaningful, productive and enjoyable for both parent and child

Objectives

• To increase child functioning through the teaching of essential skills
• To increase mother’s ability to effectively teach their children
• To decrease mother’s stress, and subsequently improve overall family well-being.
• To help parents accept their children’s differences and begin to see their child as an enjoyable, contributing member of the family and society.
• To empower parents, boost their self-confidence and enable parents see themselves as agents of change who can help other families in similar situations.

Requirements

The requirements of the programme are a room with requisite furniture, a play space, and a therapist. It is the last that is the most crucial. The therapist’s contribution determines the success or otherwise of the programme. The therapist has to be trained in a holistic approach with clear knowledge of teaching approaches. She has to be an energetic, hands-on person. In India, mothers tend to be physically static: they are expected to be a certain way and thereby often lose their spontaneity. The therapist must teach by example. She has to be a person with empathy who understands the vulnerability, the pressures and expectations, and the familial situations under which the mothers have to function. The quality of her feedback sessions will be determined by this. And, most importantly, she has to have a positive outlook and not buy into the 'terrible, sad, tragic condition of autism' belief.

A typical schedule

Sessions begin in the morning and last three hours. The day begins with assembly time, and incorporates a one to one and two group sessions that focus on fine and gross motor skills, as well as snack time. The school day ends with a music session. Following this, the children have a break while mothers sit with a therapist for a discussion and feedback on the day’s activities.

The discussion time gives mothers a chance to relax and interact with a therapist who has watched all the sessions and gives intensive feedback on behavioural issues, communication and social issues, parent responses, activities undertaken, what was done well and what could be improved. This is the time for mothers to explore issues in the home situation, to share successes and discuss specific difficulties.

Essentially, the programme runs as a regular school day, the difference being the mothers’ involvement. Initially, the therapist in charge conducts and plans the activities. Over time, the mothers take charge. By around the third week of the programme, a timetable is set up whereby mothers are given charge of certain sessions during the week. For example, for one entire week a mother might be in charge of the morning activity. In this way each mother has a chance to plan and implement activities for all the children, not just their own, as well as receive feedback. Eventually, the mothers run the programme with the therapist as observer and guide.

What Makes the Programme Tick?

The premise behind AFA’s work is what we term a philosophy of learning to be happy. Feedback and discussions help parents consider the view that having a child with autism is not necessarily a tragic situation. They also learn to want change in their child in, the perspective of their child’s happiness and not because it would make them – the parent – happy. It leads to bonding with one's own child at a freer, more accepting level, and bonding with other mothers as well. And as a bonus, they are able to discard the ‘caste system’ of disability: my child better than yours. And finally, they are able almost to tell their child: 'Whatever you are is okay.'

In the current batch, there is young K. who is five and has a few words and is well up on cognitive skills, but had very extreme behaviour issues. There is also A who also has autism and low vision. The usual visual strategies do not work with A. and it took time for us to figure out aural and tactile alternatives. As expected, A’s progress was slower than all the other children. Initially, his mother allowed herself to be demotivated. But now, even though his pace is slower than all the others, his mother is very excited about his progress and motivated to continue working with him. To her now, whatever A is, is OK with her.

Because the focus is on moving control to the mothers, they go back empowered. Mothers join the programme believing that only a therapist can help their child and that they themselves are powerless. The professional not only knows best but is the only one who knows. They complete the programme aware that they know as well, and the belief: I can do it. They go back not only knowing that when N does this I do that, but to understand why N does this at this particular time and therefore this is what I should do, and that what I have to do is not a constant, but will vary depending on N’s reasons at any given time.

As would be expected in any well-planned programme, the children inevitably progress. And there can be nothing more exciting and motivating than that. At the start, we can see mothers mentally comparing their children. One child moves quicker than the other and the mother of the second feels kind of sad. Little D was a boy in a bubble when they joined the programme. Now, in the middle of the third month, he is sitting in his place, waiting for his turn in group situations, following instructions, and using a few signs. The mother has a spring in her step; she laughs, and jumps forward to take charge whenever required.

Most importantly, mothers learn to have fun. They know that this is hard work but learn not to be discouraged when things take time to move! As they learn to enjoy their child free of expectations, their frustrations decrease remarkably.

There are, of course, some mothers who do not change, who leave disappointed when they find no magic ‘cure’. There are others who have left after the first day as they felt there was no point in being on a programme where a therapist won’t work with their child and instead where they have to ‘do all the work’.

Advantages

• Number of families served:
  -Since 2000 – 180 by one therapist
  -In a year 36 families can be trained by one individual
  
• Sustainable gains:
  -Gains easier to sustain since mother gets trained
  -Generalisation of skills as mother trained and sharing with other members of family
  
• Minimal resources required:
  -One large or two small rooms and one play area is all the space required
  -Twelve small tables, with chairs for the children ND small plastic stools for the mothers
  -A few teaching aids which is supplemented by aids created and contributed by the mothers
  -One therapist for each 12 families versus the usual ratio of 1:2
  
• Impacts on the core relationship:
  -The mother child interaction improves remarkably
  -Empowering mothers has a ripple effect
  -By empowering mothers it strengthens parent- directed support groups
  -Some of the mothers return to their homes and become resource persons for other mothers in their area, thereby building networks between parents and professionals
  -Some start support groups, small play groups etc in their areas
  -After attending the group, some parents become instrumental in helping school authorities understand their child’s unique needs and learning style
  -Parents become better advocates for the rights of persons with autism as they gain a better perspective on how different children with autism are affected, and their varying needs
  
  Disadvantages
  
• Hard for very poorest families
  -The very poor families; for instance a daily wage labourer: attending the programme would mean the loss of three months salary. Who would care for their other children while they attended the programme?
  
• Reliance on the qualities of a single therapist
  -Strong reliance on the qualities of a single therapist.
  - The therapist must be someone who will not judge the mothers, but be able to dispassionately view their strengths and weaknesses. The success or failure of the programme can depend on the therapist.
  
• Initial start-up difficult
  -Sometimes, a family comes with the expectation that a therapist will work with the child daily, and is disappointed to find it is not so. Or does not get the assurance of a ‘cure’ that she hoped for, and leaves after the first day
  
  E. Conclusion

In this paper, I have highlighted some of the challenges inherent to working within a system that does not have extensive resources for meeting the needs of people with autism. While a number of programmes that aim to spread reach have been developed, the Mother Child Programme is one of the most successful and impactful of these. Its strength lies in helping mothers understand the pitfalls in using a recipe book approach in teaching their children, and in finding their own strength and in developing their positivity. The latter in turn enables them to often become effective resource persons for other mothers. But perhaps the greatest strength of the Mother Child Programme lies in its simplicity and ease of replication. It is hoped that the suggestions and examples outlined above will allow organisations, in countries that are in a similar position as India with regard to providing services to people with autism, to make the best use of their resources.